Discussion of Terminal Illness
End-of-Life Care
Pain and Suffering
Medical Negligence
Loss and Grief
Emotional Distress
It is coming up to the fifth anniversary of my husband’s death. Regrettably, the last 7 weeks of his life were not the smooth, pain-free days that he should have had.
On 15 May, 2019, I received a call from the nursing that Allan, my husband, had had a choking incident during lunch and had been taken by ambulance to hospital. For context, Allan had Huntington’s Disease (HD), a dreadful, incurable, degenerative brain disorder. You can read more about it here.
After getting that phone call, I was immediately on the phone to the emergency department at the local hospital. As Allan’s Enduring Power of Attorney (EPOA) for health matters, and his Statutory Health Attorney as his wife, I knew I had to get on to the emergency department to make sure his wishes for treatment were known. No antibiotics, no drips, no restraints, no feeding tube. Just pain management.
Why was I immediately going to palliative care mode? In 2019, Allan was 15 years in to HD, and in the palliative phase of the disease. He had been on a “moist and minced” diet for about four years, and spoon fed (comfort feeding) for about two years. In the advanced stages of HD, he had lost all ability to speak and control swallowing. Anything he ate had a 50/50 chance of going into his stomach or lungs. He had complete dysphagia. We knew that meant a high risk of aspirational pneumonia.
Later that evening, I got a phone call from the ED that his scans were clean with no foreign substances in his lungs. He was on his way back to the nursing home. I was relieved, and exhausted. The stress on caregivers is staggering.
Imagine my distress, then, when I got a phone call from the nursing home the next morning. It was a nurse. This is what I posted to Facebook.
OH. MY. GOD. An RN at the nursing home rang to tell me that speech pathologist has told GP, no food by mouth for Allan. “We can’t starve him and there’s no palliative care plan. What do you want us to do?”.
The Clinical Manager is in essential training, and the admin person can’t find the advanced care plan we agreed on back in March of last year.
Thanks to a very dear friend, I will soon be on my way down to the nursing home to a) write a new care plan, b) raise hell that a nurse could say that to a resident’s spouse, c) raise hell that the nursing home could misplace such an important document, d) establish said speech pathologists’s experience to make such a call without any consultation with the spouse, other carers and clinical manager.
The rage is cancelling out the tears for now. Worst case, nil by mouth and no feeding tube. Best case, someone made an ill-judged decision and Allan will be enjoying pureed steak and veg for dinner.
Not much more I can say right now. Love you all.
A very calm version of these events is here, in a blog post called “The Practice Run“.
Can you imagine Allan’s anguish on the afternoon of Tuesday, 16 May, as both I and the Clinical Manager at the nursing home, confirmed his wishes for only pain management? He was sprawled on a mattress on the floor – his floor was covered in mattresses for when he fell. He had no voice, so I crouched next to him, fighting back tears, asking him to try to touch me if he wanted to say “yes”, and not try if he wanted to say “no”.
Three times, with the Clinical Manager as witness, I asked him the same questions. Three times, he answered no to everything except pain management. By this stage, he had not eaten anything since the interrupted lunch on Monday.
Away from his room, I joked to the Clinical Manager about checking if the morphine sulphate that was in the dispensary for him was still in date. She had no idea. And so started the horrible roller coaster of the next 12 days.
At day 6 of 12, I posted this on Facebook.
So, apparently it was all a false alarm because the speech pathologist made an over-zealous call. (Too bad the GP signed off on it.) So things continue as they were two weeks ago and this can be considered a false alarm. AND IT TOOK 8 DAYS FOR THEM TO FIGURE THAT OUT, putting me through the wringer in the meantime.
After 12 days, I could take no more of the questionable actions of the nursing home. Five years on, it pops up in my Facebook memories every year, and for the fifth anniversary, it deserves a detailed examination.
This is what I wrote on Facebook after those twelve days.
We’ve all seen those Facebook memes about walking away. I have’t walked away, but I have turned away. I cannot, for my own health and wellbeing, continue to engage with the management team at the nursing home.
The clinical manager said, on Friday 17/5, that she would get a blood test done to check kidney and liver function. The blood wasn’t drawn until Thursday 23/5.
Three times, I have asked for a copy of the speech pathologist’s report of Tuesday 14/5 and the GP’s sign off on it. I still haven’t received it. That was the one where it was amended from ‘nil by mouth’ to ‘comfort feeding’.
I have told them several times that Allan is in pain. He reports a constant 4/10 all over and 5/10 for his posterior, being on it all the time. Yet, his pain medication has not been increased, except the two days where I demanded an additional dose for him. I have told them that his pain levels are the first thing they should be checking.
This has lead to the facility manager checking on Allan’s legal rights. Not checking his expectation of dignity and freedom from pain, as set out in his advanced care directive.
So, I will still be there for Allan, funding his needs, and as his EPOA when he no longer has capacity to decide things for himself. But I cannot continue to engage with nursing home management. They have my contact details, so they can contact me if and when they want to discuss his condition.
Some will not agree with this decision; it is my life and my decision to make. While discussing this, I have no churning in my gut, no threat of tears, no apprehension, no increasing muscle tension, no shaky voice. I have to take care of myself, and it does him no good at all if I have a breakdown.
Perhaps, when it’s over, I will ask for his case file and take it to a solicitor or medico-legal expert for review, and then provide it to the nursing home’s corporate office. I understand about fixing it for others for the future, I do, but I cannot do that at this point in time.
In the intervening period from “nil by mouth” to me “turning away, I had taken leave from work. I had worked with his NDIS Plan Manager to ensure he had someone with him for 10 hours a day under his NDIS funding. I had notified the insurance company, contacted funeral directors, everything that you do when you know a loved one is in their final days. Except, he wasn’t.
I was kept in the dark about his alleged change of mind to refuse food on Wednesday, 17 May, and that the speech pathologist had amended her report, changing it from “nil by mouth” to “comfort feeding” sometime on Tuesday afternoon/Wednesday afternoon.
Key Failures in Care
Delayed Diagnostics
The significant delay in obtaining blood tests, from Friday 17/5 to Thursday 23/5, is concerning. In palliative care, timely diagnostics are crucial to manage symptoms effectively and provide appropriate care. If these organs aren’t functioning, medications can build up instead of being excreted, causing toxicity.
Lack of Communication and Documentation
Repeatedly requesting the speech pathologist’s report and the GP’s sign-off without receiving it is a clear failure in communication. This documentation is essential for coordinating care and ensuring that all team members are informed of the patient’s needs and treatment plan.
The key document I requested was the amended speech pathologist’s report, and the GP’s acknowledgement of the amended report.
Inadequate Pain Management
Allan’s persistent pain, with a reported constant level of 4/10 and specific areas of higher pain, indicates insufficient pain management. In palliative care, ensuring comfort and minimizing pain is a priority. The lack of appropriate adjustment to his pain medication, despite repeated reports of his pain levels, is a significant oversight.
The need to demand additional pain medication highlights the failure of the nursing home staff to proactively address Allan’s discomfort. Effective advocacy should not require repeated demands from family members.
Remember, I had asked the Clinical Manager if the morphine sulphate procured for him in March 2018 was still in date.
Ignoring Advance Care Directives
The facility manager’s focus on Allan’s legal rights rather than his stated expectations in his advance care directive is troubling. Respecting a patient’s wishes, especially regarding dignity and freedom from pain, is fundamental in palliative care.
Emotional Toll on Caregivers
The situation clearly took a toll on my emotional and psychological wellbeing. You need only read the raw Facebook post from the time to see what state I was in. I had to disengage with the management team and this underscores the systemic issues within the nursing home that prevented effective communication and care.
Related posts
I wrote a post a few days ago about advanced care directives. Back in 2019, they weren’t legally binding, which is why I had to advocate so strenuously on Allan’s behalf.
Conclusion
The failures in care identified above include delayed diagnostics, poor communication, inadequate pain management, failure to respect the advance care directive, and ineffective advocacy.
These significant failures in care likely took days off Allan’s life. Just seven weeks later, he breathed out for the last time.
Palliative care is about quality of life. Terminal care is about quality of death.
Palliative care is about enhancing the quality of life for patients with serious illnesses by managing symptoms and providing comprehensive support.
Terminal care, a critical aspect of palliative care, focuses on ensuring quality of death by prioritizing comfort and dignity in the final stages of life.
Resources
https://palliativecare.org.au/im-a-carer/
https://carersqld.com.au/carer-program/
https://www.carersaustralia.com.au/information-for-carers/palliative-care-and-end-of-life-care/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7404818/
https://www.health.gov.au/topics/palliative-care/palliative-care-contacts
The Auld Skald's Fudgel 